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Data Murky on Fertility Rates

Here’s the question on the minds of people who spend tens of thousands of dollars on fertility treatments: What are my chances of having a healthy baby?

As it turns out, it’s not always easy to tell.

Since 1992, clinics have been required to report their success rates, defined as the number of live births per in vitro fertilization cycle, to the Centers for Disease Control and Prevention. They are also supposed to report how many cycles they perform and whether the cycles involve the woman’s own eggs or donor eggs, among other factors.

But there is little regulatory enforcement of these requirements by either the C.D.C. or the Society for Assisted Reproductive Technologies, the association that forwards this data to the agency. Roughly 10 percent of clinics do not report at all.

This is a multibillion-dollar industry, and there is financial pressure for clinics to claim frequent success. “Clinics are competing with each other based on pregnancy and live birthrates,” said Dr. Vitaly Kushnir, a reproductive endocrinologist in New York who researches success rates. The clinics do not want give out negative data that might drive away patients.

Nationally, the data suggest that a 38- to 40-year-old woman using her own unfrozen eggs has on average a 21.6 percent chance per cycle of having a baby by means of assisted reproductive technology. The average treatment cost per cycle rings in at $12,400, according to the American Society for Reproductive Medicine.

A cycle, which can take on average from 60 to 90 days from the time of the initial consultation, typically starts with hormone injections, followed by egg retrieval, fertilization and then embryo transfer. But the national success rate does not distinguish between pregnancies occurring in the first cycle or a second, fifth or later cycle. The number of cycles needed to achieve a successful pregnancy makes a big difference to would-be parents in terms of money, time and emotional strain.

The clinics also are not required to report babies born full-term or not, or those born with birth defects. “The outcome data should be included to reflect the most important goals and measures of success in I.V.F. — a healthy baby and healthy mother,” said Dr. Kushnir. Moreover, success rates at individual clinics may vary widely, depending in part on the populations they serve. Some clinics have been known to turn away women who may be difficult cases — older women or those with existing medical conditions, for example — to avoid depressing their success rates.

To potential patients browsing online, it may not be clear how these clinics define success. “Someone might think the success rate is the number of live births, when really the clinic is reporting the number of clinical pregnancies,” said Jim Hawkins, a law professor at the University of Houston who has studied the claims made on the websites of fertility clinics.

Yet data on preterm birth, birth weight and birth defects are not made available to the public, although they are collected both by the society and the C.D.C. Reporting on birth defects may be inaccurate, because patient confidentiality laws make it difficult to obtain medical records after a baby is born, said Dr. Kevin Doody, a member of the executive council for the society.

The society’s guidelines prohibit clinics from comparing themselves with other clinics, Dr. Doody said. He advised patients to avoid clinics that do so.

A cottage industry has arisen to interpret clinics’ success rates in a personalized way relevant to fertility service patients. A company based in Los Altos, Calif., Univfy, sells the online tools PreIVF, for $49.50 (for those doing a first cycle) and PredictIVF for $100 (for those doing later cycles).

The products factor in age, height, weight, smoking history, previous pregnancy, clinical diagnosis, semen analysis and other lab results. (PreIVF is only for women using their own eggs.) The patient’s data is then compared to a database of more than 10,000 previous I.V.F. patients, enabling a more apples-to-apples comparisons, said Dr. Mylene Yao, a founder of the company.

According to research presented last year at the Society of Gynecologic Investigators, to which Dr. Yao contributed, both tests predicted success far more accurately than traditional age-based algorithms used by the C.D.C. and the assisted reproductive society, which is also working on a similar predictor. That online tool would allow patients to obtain more personalized success rates based on national data, Dr. Doody said.

Dr. Yao advises patients to find out if they are likely to need one or more treatments, and how much each would cost. “Then ask how certain factors in your health history could impact your success rates, and how you compare to most others patients in your situation,” she said.

And those clinic websites promising a quick trip to parenthood? Buyer beware.

“There is no need to trust a clinic’s own assessment of whether it has a high success rate,” said Mr. Hawkins, who encourages potential patients to check data posted online by the assisted reproductive society and the C.D.C.

“It is also important to try not to be swayed by appeals to emotions, like pictures of happy babies,” he said.

A version of this article appears in print on 04/29/2014, on page D6 of the NewYork edition with the headline: Data Murky on Fertility Rates.